Online Patient Groups Demonstrate The Power Of Coordination And Information
from the feeling-better dept
Groups of patients advocating for more research on specific diseases are nothing new. But thanks to the internet, these groups are rapidly growing in clout. Not only are they able to push for more research on a given disease, but they are able to do things like share information with members and raise funds together. They’re also taking a proactive role in medical innovation, as patients can coordinate ad-hoc drug trials among themselves (e.g. everyone keeps track of their side effects and shares them with each other) or find individuals for studies in need of volunteers. One of the things the internet is great at is lowering the costs of coordination among widely dispersed groups. Projects like Wikipedia are an obvious example of this phenomenon, but as this story demonstrates, online coordination can also serve an offline purpose. And it often does; even sites like Facebook and MySpace tangibly help young people, ahem, “hook up”. More professional networks are there to help people land jobs or fill vacancies. A site for film photography enthusiasts helped establish an actual factory for making a certain kind of film that had gone out of production. In addition to the obvious connection between these examples, they also underline the point that the “information economy” isn’t about selling information, but about using it to create value in other things.
Comments on “Online Patient Groups Demonstrate The Power Of Coordination And Information”
Maybe someday our government could be run by the people with a similar system. don’t worry windbags…I’m sure politicians could stay in the system somehow. Maybe they could be in charge of educating the people represent, and then everyone could vote electronically.
Online patient groups
Particularly for victims of orphan diseases, ones that are rare and/or difficult to treat, the existence of online support and discussion groups can provide a life-preserver to those who feel as if they’ve been cast into oceans of unintelligible techno-babble by the medical community. Being able to speak to others with the same symptoms and experiences, to learn of treatments, research, even to spur on new research, takes away the helplessness that a dianosis can impose, and gives patients a sense of power over their disease and their lives.
Patients running their own clinical trials??? As if they aren’t:
1. open to influences by unethical researchers;
2. ignorant of the dangers;
3. no protocol for adverse events;
4. believing what they want to believe;
5. no ethics training.
Yeah, I guess it could be a business opportunity for snake oil salesmen selling ineffective or harmful products to desperate patients. Who needs professionally conducted clinical trials when nice hippies with wooden necklaces can sell cyanide oil in homemade bottles?
Re: Complete BS
Wow. Dorpus, as usual, managed to hit the nail right on the thumb.
Re: Re: Complete BS
I’ve done that a few times. Hurts like a bitch.
Patients with rare diseases, those who truly have them, usually have no shortage of attention from medical researchers wanting to study them.